One of the most challenging situations for those of us in chronic pain is when we are working with a medical or therapeutic practitioner who is unable to see or understand the intensity of our pain. They may also feel that its longevity is either questionable or somehow due to something we, as patients, are not doing right.

Sometimes we are told to do things that are painful for us, and are not believed when we report that it hurts. Sometimes we are told that we simply can't be in the pain we're in. Practitioners have made a career of helping people in pain, yet when they invalidate clients’ experiences, they inadvertently cause more pain.

How does this happen? How do highly trained, and usually very caring, individuals end up causing more pain for the patients they are trying to cure?

Not Feeling Heard

This can manifest in a number of ways:

A treatment or protocol isn’t working, or is causing more pain, but the practitioner insists that we continue or try harder, because they believe in the treatment more than in our feedback.

The practitioner may have experience working with people in pain, but has never had to live with chronic pain so does not understand the difference between short-term pain (that usually responds readily to treatments) and long-term pain (which is a different beast altogether and multi-layered). They do not understand what I call the side effects of chronic pain which can include loss of brain power, fatigue, spaciness, and sleep deprivation and simply don't take these into account.

The practitioner does not believe that our particular condition causes the level of pain we are in, and works with us as if we have a different version of our condition or a different condition altogether.

They have an intense desire to help and would rather believe that the we are wrong than to admit they are unable to offer us a cure.

As a client, this is very difficult to deal with. It makes us feel unheard, misunderstood, and belittled. Not to mention the fact that we may feel shamed for not healing as fast as we’re supposed to or for not responding to treatment in the same way the norm does.

This is not to say that there aren’t any medical practitioners who listen to their clients. There are many caring, compassionate, and sensitive practitioners who listen and take note of what their clients report and adjust their treatments and recommendations accordingly. But, unfortunately, there are many who don’t listen. Or they listen, but they discount what they hear.

For practitioners who fit into any of the above categories, unfortunately, the fact that the treatment they are offering isn’t working doesn’t always indicate to them that they need to find different ways of handling chronic pain. For some of them, it’s easier to blame the patient.

Your Expertise Versus My Expertise

What can we, as patients, do?

It’s important to learn to speak up for ourselves. However, when we’re in pain, it can be very challenging to take a stand of any kind. We’re usually exhausted and operating on limited brainpower. Often it’s difficult to do anything more than barely stumble through a medical appointment. But I do feel that it is up to those of us who live with chronic pain to educate the medical establishment when we have the opportunity to do so.

I have written some talking points below to help you begin the conversation with your practitioner, should the need arise.

You can also use my Statement for Practitioners on my website as a basis for having a conversation or print it out and take it with you to appointments.

Here are some talking points you might use:

I respect you as an expert in your field. I ask you to respect me as an expert in how I am experiencing pain in my own body.

My direct experience is the most valid basis we have to assess how treatments are working or not working, and I ask you to be willing to listen to my feedback and take it into account.

When you insist that you know more about my experience of pain than I do, I feel belittled and invalidated.

If treatments do not work for me in the same way they do for the majority of your clients, it does not mean I am not trying hard enough. It does not give you a basis for discounting my experience. It means there is something new to learn here.

One thing that can be very helpful is to keep a pain diary, a record of the kind and level of pain you experience from day to day, and bring it with you to medical appointments. I’ll write more in my next post about keeping a pain diary.

It’s too bad that those of us who are already in pain sometimes have to endure more pain, both physical and emotional, when we’re working with certain practitioners. I wish it were not so. But, I believe, since some seem ill equipped to work with long-term pain, it may be up to us to educate them with our gentle, but insistent truth.

Sometimes people who aren't in pain imagine that those of us who are must have done something wrong.

The exact wrong thing we did is a bit unclear, but it must certainly exist, and it is something they would never do. As if there's a sign in the road. No Pain: Go Left. Pain: Go Right.

In the Land of Pain

There isn't a sign. It's more like the floor drops out from under you, and there you are in the Land of Pain. I wrote The Pain Companion to try to make sense of my sudden and unplanned detour there.

I wrote because I was drowning. I was drowning in physical pain with no end in sight. I looked around my tiny house and it seemed that my whole life had shrunk to that lilliputian size. I had given up almost everything because my condition demanded it. I had contracted my life, shrunk down within it, and withdrawn out of necessity since almost every activity other than walking made it worse.
I sat in my house and felt the fear of disappearing forever inside my own house of pain. I can't let this happen, I thought. I cannot become this pain. And yet, it seemed that in many ways I already had. Pain and Thoracic Outlet Syndrome dictated everything about my life.

I was losing myself.

No Known Exit Code

Pain had become the air I breathed, the ground I walked on. Pain was both the prison and the guard. If you have been in pain for any length of time, you know what I mean. Changing your attitude might make the cell a little more comfortable, but it doesn't necessarily provide the key to the cell door. There is a secret exit code that nobody seems to know, but which cannot be bypassed.

Some people have said to me Oh, how great to have all that free time! Um. No. If you have a body that works well and isn't in pain, more time to do nothing would doubtless be a blessing. But all that "free time" in which to sit or lie or walk slowly in intense pain...not so much.

I write to throw a voice out from the submerged world of pain. Not to bring pain out into the world, but to allow myself a way to reconnect, to feel less invisible, to cast a line out from the depths. If it catches somewhere, or if someone connects with it, maybe I can use it to haul myself back out again because there is no obvious door out of the inner wells of chronic pain.

Staying Visible

Those of us in persistent pain sometimes keep ourselves small and silent so we won't infect the world, thinking that if we speak it can only be with the voice of pain, and therefore it will only create more. As if we can't re-enter the world until we are pain free.

But we must find ways to re-include ourselves in the world somehow. Maybe only in small ways at first, and according to our physical limitations, but it is something I feel we must do. We are part of the collective, a community within a community, and it is important to give voice to our experiences.

It is important not to let the invisibility of our pain become the invisibility of ourselves.

Image: Miranda, John William Waterhouse, 1875 (Wikimedia Commons)

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One of the most workable metaphors I’ve found for myself for making peace with intense, long-term pain is the metaphor of befriending and soothing a wounded animal.

What would we do if we found a wild animal shivering, scared, hurt, and bleeding in our home? Would we get angry and try to forcibly remove it? Would we leave the room, close it up tight and lock the door?

Pain can seem like a dangerous beast, ready to lash out at any moment. Maybe we back away. We feel scared.

We treat it as an unwelcome invader. We want it out of our body as fast as possible. We try to find the Animal Control person to have it removed.

Getting Used To Being Present With Pain

Yet, in the case of chronic pain, it refuses to budge. We try to ignore it, maybe metaphorically locking it in an empty room inside ourselves, but it’s still in there growling or howling or simpering all the time.

In the case of the wounded animal, we might try opening the door slowly, entering the room a little ways or just standing in the doorway. We would let it know we’re there and we’re not going to hurt it further. We would let it get used to our presence. We would look at it with kindness and just be with it. We might sit down so we don’t appear threatening.

The animal then begins to appear differently to us. We stop seeing only its fangs and claws and notice the caked blood and dirt on its fur and that it needs care and how frightened it is and alone. We begin to have compassion for it. We speak soothingly to it.

The Ally Beneath The Matted Fur

We lose our concern with getting rid of it right away as we become more and more interested in helping it, and taking care of it. Instead of trying to forcefully expel it from our experience, we decide to include it.

After all, it’s already in the house.

We may move a little closer and notice its reaction. We see how it gets used to our presence, how our caring attention seems to allow it to relax a little.

Over time, it let’s us get close enough to clean its wounds and care for it. We see how it relaxes under our gentle touch. We notice that it is a beautiful animal beneath the encrusted blood and matted fur.

We accept that it’s already here and won't leave through force. We learn to treat it as if, underneath the fangs and the claws, it carries a valuable gift for our lives, something we need to know, to understand, to be with, to accept, to grow into.

As we befriend the animal, we may find a potential ally; a fox, a dog, a wild cat or a majestic bird of prey. It holds an energy and an intelligence that is available to enrich our lives.

Approaching Pain With Trust

Of course, in order to help the animal, to become its caretaker, we must change our perspective. We must move from seeing the animal as a dangerous nuisance to a potential friend and ally.

We might approach our intractable pain in much the same way, creating a relationship of trust based on respect, even if we are still a bit wary and choose to keep our distance at first.

This requires allowing the possibility of something being present there in the experience of pain that we may not have seen at first, something that might not be part of our usual experience - something wild and unkempt and lost, perhaps - but valuable nonetheless.

We slowly allow ourselves to get closer to the pain we carry, to see it with different eyes and, instead of trying to control it and kill it as the only answer, we spend time getting to know it, making peace with it, and finding out what unexpected gifts of wisdom and strength may lie within the seemingly unapproachable and frightening aspects of the wounded beast within our pain.

Everyone who has been in pain for some length of time has asked themselves these questions: Why is this happening to me? What did I do wrong to deserve this?

We struggle with feelings of guilt and shame for needing help, for not being able to fix ourselves, for probably asking too much of everyone around us, for causing people to feel bad for us, for needing financial assistance.

To add insult to injury (literally), there is a prevalent New Age attitude that says that if you just visualize and think positively, you can change anything you don't like into the way you want it to be.

The secret to the perfect life is in our heads. If we're poor or unfulfilled or in pain we just need to think differently.

Just Think Positively...

Don't get me wrong, I'm all for thinking positively. I practice it every day.

But, after years of working through all manner of New Age palliatives to change my beliefs, the way I speak, the way I think, and how I perceive myself - resulting in very little perceptible change in my painful condition - I'm here to say that sometimes, when you're in pain and you can't get out, it's not because you're not thinking positively enough.

Some pain comes in and won't leave. There may not be a tidy explanation, but it doesn't mean that we are off our center, or we are lacking in some fundamental way, or are not good people, or not in alignment with God or the Universe, or we haven't prayed or fasted or meditated enough, or burnt off our karma yet.

Being in pain does not automatically put you at fault.

The fact that you don't have an off switch for your pain does not mean that you aren't trying hard enough or that in some insidious way you must want to be in pain. It does not mean that you have failed, or must have been a terrible person in a past life.

Asking Different Questions

Being in pain doesn't prove anything negative about you at all. An estimated 1 in 3 Americans are in pain right this moment. That's a lot of people.

So, the questions we might want to begin to ask about all this pain may be more about ourselves as a culture rather than ourselves as individuals.

Yes, we may ask ourselves, What can I do differently in my life to relieve this pain?, but we also may need to ask, How are we, as a people, creating so much pain for ourselves? Then the answers become less of a private struggle and more of a community effort toward greater harmony and balance at all levels of our lives.

And if this epidemic of pain is as much of a collective as a private experience, then maybe part of the solution is to understand that we are, somehow, all in this together.

That the healing needed may not be only along a solitary path, but something we need to address as a society. We have somehow created a culture where violence and alienation is the norm and, perhaps, our painful bodies go hand in hand with that. Isn't it even remotely possible that some of us may be feeling this collective alienation as illness and pain in our bodies?

And This Helps Me How?

And you might well ask, how does speculating about this help me with my pain today?

For me, as much as I would not want to wish this experience of pain on anyone, it eases my mind to know that I'm not alone in it, that there seems to be something bigger at work here than my own private path through it, and that, while the answer may not be easy, it may also not be entirely up to me to figure it out all on my own.

And, right now, today, that is something of a comfort.

Image: The Dryad, Evelyn de Morgan, 1884-5 (Wikimedia Commons)

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Sarah Anne Shockley is the author of The Pain Companion series of books on holistic pain management and pain relief. Visit her at www.thepaincompanion.com for resources for people in chronic pain and more information on her work.

For most of us, it's pretty difficult to stay cheerful and pleasant when we're in pain and, honestly, I'm not sure it's particularly healthy to try. We do, however, have to keep following the best path we can for ourselves.

We find ways to laugh, to keep a mostly hopeful outlook, and to keep searching for new alternatives and looking out for any light we can perceive in the distance.

Despite our generally positive attitude, however, over time we often find ourselves feeling worn down. We've tried everything to heal our condition, and to relieve our pain, yet we're still in it.

A Daily Act of Courage

Sometimes it's easier to fall into a kind of grim resignation than to keep putting energy and hope into treatments and practices that may not seem to be making much of a difference.

Over time, we can sink almost imperceptibly lower and lower emotionally into a kind of ever-present depression, where life seems gray and lifeless and it becomes a major act of courage just to get up and face another day. I think of this as a kind of seeping loss of hope that can drain whatever remaining well being we have, if we're not careful. Giving up, giving in, abandoning hope, and abandoning ourselves may bejust around the corner.

When I feel like this, I have to remind myself that every day I'm alive I'm in some kind of process, or practice. I'm either moving toward more wellness of whatever kind I can manage, physical or emotional, or I am allowing the pain in my body to decide for me how I feel about myself and about life.
If I insist that pain must leave completely before I can be happy again, then I am making it the master of my emotional well being.

The Practice of Finding Balance

This effort, to live with pain and not succumb to depression or despondency, is an effort to find emotional, mental, and physical balance within and around the pain - a balance between not forcing myself to be unrealistically bright and cheery, but not wallowing in self pity either. This takes mental and emotional discipline. It becomes a form of daily spiritual practice.

Certainly, living with pain is not a path anyone in their right mind would consciously choose as a spiritual practice for themselves. It is a difficult and lonely path that we walk out of necessity, quiet and internal, ​but it can also be surprisingly deep and rich.

​It's not that being in pain is inherently spiritual, despite the fact that some religions consider suffering to be a holy sacrament (a concept I don't embrace). For me, it's certainly not the suffering or the pain or some kind of sacred martyrdom that gives a spiritual quality to the path through pain.

It's how we are with the pain. It's what we do and don't do with it and through it.

Standing With The Self Through Pain

For me, the spiritual aspect of the journey isn't that you try to be cheerful or that you think positively or you try not to complain and be the perfect patient. In fact, those things can be very counterproductive. No, for me, it's first and foremost the choice to stay with myself, so to speak, to be true to my own feelings and to learn tostand by me. I am there for me.

And that standing with the self, believing in the self, not giving up on the self, whatever that looks like for each of us, can be incredibly hard to do - to not take the path of hating life, of hating who we are, of hating the circumstances - that standing with the self through the difficulties, is the path.

And when we find the bitterness, the anger, and the hatred rising up - toward ourselves or toward the circumstances - we can feel it and let it pass through. We choose to honor what's coming up, but we choose not to live there.

It's a daily spiritual practice to constantly return to openness to whatever good the day may bring, to be present with ourselves no matter what the circumstances may be, and to express.our inner spirits, however little and however much we can manage to do authentically, despite the challenges and through the challenges of living with our pain.

And doing that is a very deep spiritual practice. It takes courage and fortitude, resolution and determination, and an inner choice which we must constantly renew (despite pain's insistence to the contrary) to stand with ourselves, and remain the center and the heart of our own lives.

Sarah Anne Shockley is the author of The Pain Companion series of books on holistic pain management and pain relief. Visit her at www.thepaincompanion.com for resources for people in chronic pain and more information on her work.

Disclaimer

Nothing on this website constitutes medical advice and is not intended to be a substitute for the medical advice of physicians. The reader should consult a physician in matters relating to his or her health and particularly with respect to any symptoms that may require diagnosis or medical attention.